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Medical and Financial Assistant Programs In our search for financial assistance for traveling to see a specialist for Periodic Paralysis (PP): Andersen-Tawil Syndrome (ATS) in another state and for being part of study for ATS, we came across an organization, National Organization for Rare Diseases (NORD), that sent me a list of medical and financial assistance programs. We are posting this list for those who need to travel great distances to see specialists or attend MDA Clinics and/or for those of you do not have insurance or are underinsured and/or for those who cannot pay for their medications or may need a wheelchair, etc. The list below assists with: Locating health insurance in all 50 states Subsidizing the cost of health insurance premiums Providing pharmacy and treatment co-payment assistance Assisting with Medicare Part D Co-insurance Helping with advocacy for Social Security Disability Housing while traveling for medical reasons Assistance with basic living needs during a medical crisis Assistance with out-of-pocket care costs Assistance for parents caring for their special-needs children Assistance for medical devices such as wheelchairs and scooters Assistance with respiratory services And much more Financial Assistance Programs Below are some links regarding medical/financial assistance programs. I hope you find them helpful. (Please don't forget to first try contacting your local social services department and/or charitable organizations in your area.) Medication Assistance Programs from NORD: Website: http://www.rarediseases.org/patients-and-families/patient-assistance 203-744-0100 x224 Other Financial Assistance Programs: Patient Services, Inc. P.O. Box 5930, Midlothian, VA 23112, 1-800-366-7741, Email: [email protected] , Website: https://www.patientservicesinc.org/

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Medical and Financial Assistant Programs

In our search for financial assistance for traveling to see a specialist for Periodic Paralysis

(PP): Andersen-Tawil Syndrome (ATS) in another state and for being part of study for

ATS, we came across an organization, National Organization for Rare Diseases (NORD),

that sent me a list of medical and financial assistance programs.

We are posting this list for those who need to travel great distances to see specialists or

attend MDA Clinics and/or for those of you do not have insurance or are underinsured

and/or for those who cannot pay for their medications or may need a wheelchair, etc. The

list below assists with:

• Locating health insurance in all 50 states

• Subsidizing the cost of health insurance premiums

• Providing pharmacy and treatment co-payment assistance

• Assisting with Medicare Part D Co-insurance

• Helping with advocacy for Social Security Disability

• Housing while traveling for medical reasons

• Assistance with basic living needs during a medical crisis

• Assistance with out-of-pocket care costs

• Assistance for parents caring for their special-needs children

• Assistance for medical devices such as wheelchairs and scooters

• Assistance with respiratory services

• And much more

Financial Assistance Programs

Below are some links regarding medical/financial assistance programs. I hope you

find them helpful.

(Please don't forget to first try contacting your local social services department

and/or charitable organizations in your area.)

Medication Assistance Programs from NORD:

Website: http://www.rarediseases.org/patients-and-families/patient-assistance

203-744-0100 x224

Other Financial Assistance Programs:

Patient Services, Inc.

P.O. Box 5930, Midlothian, VA 23112, 1-800-366-7741, Email:

[email protected], Website:

https://www.patientservicesinc.org/

Patient Services, Inc. (PSI) is the "ground breaking" 501(c)(3) non-profit, charitable

organization of its kind. Two decades ago, we recognized the importance of providing a

"safety net" for patients with chronic illnesses who were struggling to keep up with

expensive premiums and co-payments. Since 1989 we have led the charge to provide

much needed patient assistance, soliciting donations to fund thousands of patients and

their families in a myriad of disease areas. Today we're flattered by our emulators (other

similar foundations) who demonstrate just how critical the need continues to be.

Patient Services continues to provide peace of mind to patients living with specific

chronic illnesses by:

• Locating health insurance in all 50 states

• Subsidizing the cost of health insurance premiums

• Providing pharmacy and treatment co-payment assistance

• Assisting with Medicare Part D Co-insurance

• Helping with advocacy for Social Security Disability

Needy Meds

Website: http://www.needymeds.com/ Phone #: 215-625-9609

The mission of NeedyMeds is to make information about assistance programs available

to low-income patients and their advocates at no cost. The NeedyMeds website is the face

of the organization. Databases such as Patient Assistance Programs, Disease-Based

Assistance, Free and Low- Clinics, government programs and other types of assistance

programs are the crux of the free information offered online. NeedyMeds is funded by

small grants, donations, sponsorships, subscriptions to PAPTracker, and syndication of

various database information. NeedyMeds also works with the patient assistance

programs of several pharmaceutical distributors.

Patient Access Network Foundation Website: https://www.panfoundation.org 866-316-7263

The Patient Access Network Foundation is an independent, national 501 (c) (3)

organization dedicated to providing underinsured patients with co-payment

assistance through 31 disease-specific funds that give them access to the treatments

they need.

Human Connexus Foundation (HCF)

1177 Branham Lane, #325, San Jose, CA 95118, Website: http://www.humanconnexus.org/?page_id=2

Email: [email protected]

Human Connexus Foundation supports individuals or families by providing

financial assistance to help those in need with basic living needs (i.e. rent, car

payment, utilities, phone, etc). The hope is that within a short period of time, the

recipient and/or family will be back to living a “normal life”. Caring Voice Coalition 8249 Meadowbridge Road, Mechanicsville, VA 23116, Tel: (804) 427-6468, Toll-

free: (888) 267-1440, http://www.caringvoice.org

RX Assist Patient Assistance Program Center

http://www.rxassist.org/default.cfm

http://www.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient

_Assistance_Programs.htm

(Mental Health Medications)

http://www.edhayes.com/indigent.html

http://www.medicationfoundation.com/

http://www.familyvillage.wisc.edu/hospital/meds.htm

Also, try contacting the manufacturer of the drug for possible program

opportunities/financial assistance with the medication you are taking. Furthermore, for clinical trials and investigative therapies, which are free, go to http://www.clinicaltrials.gov 1-800-411-1222 _______________________________________________________________________________________

The HealthWell Foundation P.O. Box 4133, Gaithersburg, MD 20878, (800) 675-8416, 9:00 am to 5:00 pm

Monday through Friday Eastern Time, For shorter hold times, please call

Wednesday, Thursday or Friday mornings

Fax: (800) 282-7692, http://www.healthwellfoundation.org/

The HealthWell Foundation®

is a 501(c) (3) non-profit organization established in

2003 to address the needs of individuals who cannot afford their insurance

copayments, premiums, coinsurance, or other out-of-pocket health care costs. The

HealthWell Foundation®

assists with numerous disease states and medications:

_______________________________________________________________________________________

M.O.R.G.A.N Project:

3830 S. Highway A1A, Suite C4, #153, Melbourne Beach, FL 32951 Telephone:

(321) 506-2707 E-mail: [email protected], Website:

http://www.themorganproject.org, http://themorganproject.org/2011-

New%20Resources-updated14Feb11.pdf

The M.O.R.G.A.N. Project is a voluntary, non-profit organization whose mission is

to work together to promote awareness and support of parents caring for their

special-needs children, and to enhance the quality of life for these special families.

The M.O.R.G.A.N. Project offers grants for the purchase of needed equipment for

medically fragile children.

Link to Financial Assistance Information from Genetic and Rare Diseases

Information Center:

http://www.genome.gov/11008842#insurance

• Phone: (888) 205-2311

• International Phone: 1 (301) 251-4925

• TTY: (888) 205-3223

Department of Health and Human Services

The Department of Health and Human Services (DHHS) has information on

assistance in paying for medical care for low-income families. Go to "Families &

Children."

Contact DHHS directly:

The U.S. Department of Health and Human Services

200 Independence Avenue, S.W.

Washington, D.C. 20201

Telephone: 202-619-0257

Toll-free: 1-877-696-6775

Link to Financial Assistance for Families - National Relief Hotlines:

http://www.careconnectusa.org/our_products.asp

CareConnect USA 2019 Sandy Pond Lane, Waxhaw, NC 28173, Tel: (800) 291-1068, Email:

[email protected]

We've assembled a free list of family relief hotlines for financial assistance in

critical categories. Designed by counselors for counselors, they fit neatly into

dayplanners of two popular sizes.

Patient Assistance Programs

AmeriCares

88 Hamilton Avenue, Stamford, CT 06902, (800) 486-HELP, (800) 486-4357, http://www.americares.org/wherewework/united-states/pap/

AmeriCares Patient Assistance Programs serve uninsured and underinsured

individuals by providing medications to unqualified, low-income individuals and

families at no cost, through generous donations from AmeriCares pharmaceutical

partners.

Medical Supplies

Wheelchairs

Free Wheelchair Mission

Toll-Free: 800-733-0858, Phone: 949-273-8470, Fax: 949-273-8471

http://www.freewheelchairmission.org/site/c.fgLFIXOJKtF/b.4916275/k.BE91/Home.htm

Founded in 2001, Free Wheelchair Mission is an international nonprofit

organization dedicated to providing wheelchairs for the impoverished disabled in developing nations. Headquartered in Irvine, California, FWM works around the

world in partnership with a vast network of humanitarian, faith-based and

government organizations, sending wheelchairs to hundreds of thousands of

disabled people, providing not only the gift of mobility, but of dignity,

independence, and hope.

Wheelchair Foundation

3820 Blackhawk Road Danville, California 94506, USA Call Us Toll-Free: (877) 378-

3839, North America: (925) 736-8234, FAX: (925) 648-0163,

http://www.wheelchairfoundation.org/

The Wheelchair Foundation is a nonprofit organization leading an international effort to

create awareness of the needs and abilities of people with physical disabilities, to

promote the joy of giving, create global friendship, and to deliver a wheelchair to every

child, teen and adult in the world who needs one, but cannot afford one. For these

people, the Wheelchair Foundation delivers Hope, Mobility and Independence.

Soles for Soles Outreach

http://barefootrunner.org/fwcm/fwcm.htm

Transforming lives through the gift of mobility

Hoverround

http://www.hoveround.com/landing/free-info-kit-1/?gclid=CMGrveKat5sCFRBM5QodLmy0BQ

Call us toll free at 1-800-542-7236

Americare Respiratory Services, Inc.

(866) 344-2774

A personal Care Specialist is assigned to each new patient and submits all the required

paperwork to help get your CPAP or BiPAP machine, mask, and supplies promptly. Our

Care Specialist will give you ongoing support and unsurpassed service.

Under the direction of an On-Staff Respiratory Therapist our Care Specialists are trained

to troubleshoot any problems that patients may have with CPAP machines or masks to

help you Sleep Better Now...

A personal Care Specialist is assigned to each new patient and submits all the required

paperwork to help get your CPAP or BiPAP machine, mask, and supplies promptly. Our

Care Specialist will give you ongoing support and unsurpassed service.

Under the direction of an On-Staff Respiratory Therapist our Care Specialists

are trained to troubleshoot any problems that patients may have with CPAP

machines or masks to help you Sleep Better Now...

http://www.insurance4cpap.com/?gclid=CKDH55ies6oCFeJ65QodSzn08g

Link to Disability Programs:

http://www.ssa.gov/disability/

http://www.ssa.gov/d&s1.htm

More on Social Security Disability Benefits:

http://www.disabilitysecrets.com/resources/social-security-disability

Transverse Myelitis Association www.myelitis.org.)

Phone: +1 (614) 766-1806 (Eastern Time)

Email [email protected]

Extra Help Program with Prescription Drug Costs for Medicare Recipients:

http://www.ssa.gov/prescriptionhelp/

1-800-772-1213

Financial resource directory (from Reflex Sympathetic Dystrophy Association

website: http://www.rsds.org/4/resources/index.html

In Pain and Agonizing About the Bills

This resource directory for People with RSD/CRPS covers government assistance

programs; free medicines (for those who can't afford them); clinical trials, food

stamps, and other ideas for those who suffer financially from the effects of

RSD/CRPS.

Navigating Medicare and Medicaid: A Resource Guide for People with

Disabilities, Their Families, and Their Advocates

The Basics of Health Insurance and Appeals:

http://www.rsds.org/4/resources/pdf/Basics_of_Insurance_Appeals.pdf

Catholic Charities/Health Care

Sixty-Six Canal Center Plaza, Suite 600, Alexandria, Virginia 22314, Phone: (703)

549-1390

Fax: (703) 549-1656, http://www.catholiccharitiesusa.org/Page.aspx?pid=1300

Association of Jewish Family & Children's Agencies

5750 Park Heights Avenue, Baltimore, MD 21215, Phone: 800-634-7346, Fax: 410-664-

0551, Email: [email protected], http://www.ajfca.org/

United Way:

Call 2-1-1

Go to www.211.org and type in your zip code

http://www.unitedway.org/ourwork/ci.cfm

Texas Scottish Rite Hospital for Children:

2222 Welborn Street, Dallas, Texas 75219, (214) 559-5000, (800) 421-1121

http://www.tsrhc.org/default.asp?contentID=52

___________________________________________________________________

St. Jude Children's Research Hospital 262 Danny Thomas Place, Memphis, TN 38105, (901) 595-3300

http://www.stjude.org/stjude/v/index.jsp?vgnextoid=f87d4c2a71fca210VgnVCM10

00001e0215acRCRD

All patients accepted for treatment at St. Jude are treated without regard to the

family's ability to pay.

Shriners Hospitals for Children

2900 Rocky Point Dr., Tampa, Fl 33607, Telephone: 813-281-0300

Patient Referal/Eligibilty Information E-mail: [email protected], Telephone: 800-237-5055 (in the U.S.)

Telephone: 800-361-7256 (in Canada), http://www.shrinershospitalsforchildren.org/

Admission is based solely on a child’s medical needs, regardless of financial need.

For patients at Shriners Hospitals, ability to pay or insurance coverage is never an

issue. There is no charge for any care or services provided within Shriners

Hospitals for Children facilities.

Early Intervention Program for Infants and Toddlers with Disabilities (Part C

of IDEA):

http://www.nectac.org/partc/partc.asp

Children's Organization For Rare Diseases (Cord)

Coping with the financial issues of rare diseases:

http://www.crdnetwork.org/blog/tag/cord/

Variety – The Children's Charity of the United States

4601 Wilshire Boulevard, Suite 260, Los Angeles, CA 90010, Telephone: (323)

954-0820, Fax: (323) 954-8630, E-mail: [email protected], Website:

http://www.usvariety.org

Is a not-for-profit, philanthropic organization with locations throughout the United

States. Variety Kids on the Go! aims to help kids with disabilities gain mobility,

confidence, freedom, independence and the chance to join in the life of their

community by providing funding for walkers, wheelchairs, specially-designed

adaptive bikes, strollers, prosthetic limbs and other devices to families with the

most need.

The MDS Myelodysplastic Syndromes Foundation 4573 South Broad St. Suite 150, Yardville, NJ 08620, Phone within the US: 1-800-

MDS-0839,

Link to More Information re: Financial Assistance: http://www.mds-foundation.org/pdf/2011-InsReimbBooklet4thEdition4-7-11.pdf

HRSA Information Center PO Box 2910, Merrifield, VA 22116, Telephone:

(703) 442-9051, Fax: (703) 821-2098, Toll-free: (888) 275-4772, TTY: (877) 489-

4772, E-mail: [email protected], Website: http://www.ask.hrsa.gov/

The HRSA Information Center distributes informational materials developed by the

Health Resources and Services Administration (HRSA) or its grantees. HRSA is an

agency within the U.S. Department of Health and Human Services (DHHS). The

National Maternal and Child Health Clearinghouse distribute informational

materials developed by the Federal Maternal and Child Health Bureau (MCHB) or

its grantees. MCHB is an agency within the Health Resources and Services

Administration (HRSA), U.S. Department of Health and Human Services (DHHS).

The Clearinghouse also provides referrals to other organizations that offer

information and support to affected mothers and children. The Clearinghouse

provides publications, resources, and referrals on health care services for low-

income, uninsured individuals and those with special health care needs. Most of

the educational materials distributed by the Clearinghouse are written for

professionals; however, it also distributes materials written for the public. The

Clearinghouse responds to requests for information from health care professionals,

program planners, educators, researchers, policy makers, and the general public.

Most of the educational materials distributed by the Clearinghouse are written for

professionals; however, it also distributes materials written for the public.

Centers for Medicare & Medicaid Services

Waivers are state-run programs that use federal and state funds to pay for health

care for individuals with certain health conditions. Each state has different Waivers

with different eligibility requirements or services. Two Medicaid statutes are

currently waived: 1915 and 1115.

To find out your state's Waiver programs go to:

https://www.cms.gov/ContactCMS/

• Medicare Service Center: 800-MEDICARE (800-633-4227)

• Medicare Service Center TTY: 877-486-2048

Medicaid State Waiver Program Demonstration Projects - General Information

https://www.cms.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp

___________________________________________________________________

Wisconsin Department of Health Services

http://www.dhs.wisconsin.gov/bdds/kbp/

Main Phone: (608) 261-6836

Fax: (608) 261-6752

Mailing Address: 1 W. Wilson St., Rm. 418; PO Box 7851; Madison, WI 53707-7851

KATIE BECKETT WAIVER PROGRAM:

Medicaid Waivers are state-run programs that use federal and state funds to pay

for health care for people with certain health conditions.

This waiver is so named for Katie Beckett, a child (now an adult) who required the

use of a ventilator. Her family’s income made her ineligible for Medicaid coverage.

Because of the extreme financial burden this placed on her family, they could not

afford to sustain the level of care for their child to remain at home.

The Katie Beckett Waiver supports the family’s privilege and choice to care for

children at home with the necessary support. It is a more beneficial and cost-

effective choice for states, in comparison to the exorbitant costs of hospital or

nursing home care.

There are specific eligibility requirements:

1) The child must be under 19 years of age and disabled by standards set

forth in the Social Security Act.

2) The child must require a level of care at home that is typically provided

in a hospital or nursing facility.

3) The care can be provided safely and appropriately in the family home.

The parents’ income is not a consideration in determining a child’s eligibility for

this benefit.

There are other Medicaid Waiver programs that may of assistance. To obtain

information and to find out your state’s waiver programs, go to http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/MWDL/list.asp

If your insurance company has denied your claim for treatment, the following

sample letter can be used, edited to your specific condition/treatment/procedure,

and sent to your state insurance commissioner.

*Send this letter certified mail.

You can find your State Commissioner Insurance Commission’s address by going

to http://www.naic.org/state_web_map.htm.

Sample Complaint Letter to State Insurance Commission:

Name of State Insurance Commission

Name of Your Insurance Company

Address of Insurance Company and Telephone Number

Dear Insurance Commissioner:

I have filed the attached insurance claim with _______________(insert name of

your insurance company) on___________(insert date[s]).

My physician has deemed this therapy/procedure/drug/etc. medically necessary for

my medical condition. However, my insurance company has denied me access to

the standard of care. I have had the following specific problems with this insurance

company:

(List all of your problems, such as refusal to cover physician-prescribed therapy,

claim has not been paid or has been denied, etc.)

Please accept this letter as a formal written complaint

against_______________(insert name of your insurance company).

Sincerely,

Your Name

Your Address and telephone Number

CC: Medical Director, _________________(insert name of your insurance

company).

CC: Your physician

____________________________________________

Alliance of Claims Assistance Professionals www.claims.org

(888) 394-5163

[email protected]

The Alliance of Claims Assistance Professionals is a national, not-for-profit organization

that is a national resource for patients and caregivers seeking help with health insurance

claims. Claims Assistance Professionals serve as a patient's advocate and provide an array

of services that patients can use to deal with health insurance firms. These services include:

• Challenge denials of claims by the insurance company

• Organize health insurance paperwork

• Audit hospital and provider charges

• Negotiate with providers on patient balances

• Review medical bills and determine proper payment

• File various types of insurance claims (medical, long term care, FSA, HSA)

• Track claims to ensure they are accurately processed

• Contact providers and insurance companies to resolve claim problems

• Assist in selecting Medicare Part D drug plans and Medicare supplement plans

• Assist with choices during employer open enrollment

• Provide education on benefits and options

• Negotiate providers' fees for uninsured patients or procedures

___________________________________________________________________

______________

Financial Aid Resources

Financial Aid Information Page

www.finaid.org

Provides and overview of financial aid options, bibliography of more than 400

books, and calculators allowing students to perform cost calculations. Also has a

Q&A function where students can email questions to be answered by financial aid

administrative volunteers. Federal Student Aid Information 1�800�433�3243

Provides information on federal student financial aid. Has trained counselors

available to answer student's questions. Scholarship Research Network www.srnexpress.com

1�301�670�1260

Student can search this free site for more than 8,000 scholarships. This site focuses

on private scholarships that can be used at many different institutions.

FastWEB

www.fastweb.com

1�800�FASTWEB

Site has access to 275,000 scholarships. Updates on scholarship matches are sent

via e-mail. This service is free.

The College Board

www.collegeboard.org

A not-for-profit organization that helps students with the transition between high

school and college. Website has a free on-line scholarship search database. HEATH

www.acenet.edu

1�800�544�3284

National clearinghouse that provides information for people with disabilities who

are seeking education after high school. A small number of scholarships for those

with learning disabilities are available on this site. President's Committee of Employment of People with Disabilities

1�202�376�6200

This committee provides five to six scholarships from various businesses for people

with verifiable disabilities every year.

Foundation Center

1�800�424�9836

This toll-free service line directs you to libraries that carry the Foundation Grants

for Individuals listings.

Department of Education

www.ed.gov

Department of Education's website contains the Student Guide to Financial Aid.

The application for federal student aid, the required form for anyone applying for

college financial assistance, is also accessible from this site.

___________________________________________________________________

______________

Hole in the Wall Camps

228 Saugatuck Avenue, Westport, Connecticut 06880, Tel: (203) 562-1203, Fax:

(203) 341-8707

E-mail: [email protected], www.holeinthewallcamps.org

Is the world's largest global family of camps for children with serious illnesses and

life-threatening conditions. Children who are living with cancer, sickle cell anemia,

HIV/AIDS, and many other medical conditions come to camp and experience the

simple joys of childhood, without compromising any of their needs thanks to our

high-quality medical care. To date, more than 119,000 children with serious

illnesses from 40 countries including the United States have attended a Hole in the

Wall Camp free of charge.

___________________________________________________________________

______________

Financial Help for Treatment of Kidney Failure

http://www.kidneyurology.org/Library/Kidney_Health/Financial_Help_for_Tr

eatment_of_Kidney_Failure.php

Kidney & Urology Foundation of America, Inc.

2 West 47th Street, Suite 401, New York NY 10036, 212.629.9770 or

1.800.633.6628, Fax 212.629.5652

If you have permanent kidney failure, you may be worried about paying for the

expensive treatments you need. In 1972, Congress passed legislation making

people of any age with permanent kidney failure eligible for Medicare, a program

that helps people over 65 and people with disabilities pay for medical care, usually

up to 80 percent. Other public and private resources can help with the remaining

20 percent. Your dialysis or transplant center has a social worker who can help you

locate and apply for financial assistance.

___________________________________________________________________

______________

Federal Site for Low Income Home Energy Assistance Program

http://www.acf.hhs.gov/programs/liheap/

Low Income Home Energy Assistance Program HHS, Administration For Children and Families

Office of Community Services, Division of Energy Assistance (DEA)

Aerospace Building, 5th Floor West, 370 L'Enfant Promenade, S.W., Washington, D.C.

20447 Phone Number: (202) 401-9351, Fax Number: (202) 401-5661

The mission of the Low Income Home Energy Assistance Program (LIHEAP) is to assist

low income households, particularly those with the lowest incomes that pay a high

proportion of household income for home energy, primarily in meeting their immediate

home energy needs.

National Foundation of Dentistry for the Handicapped 1800 15th Street, Suite 100, Denver, CO 80202, Telephone: (303) 534-5360, Fax:

(303) 534-5290, E-mail: [email protected], Website: http://www.nfdh.org

National Foundation of Dentistry for the Handicapped (NFDH) is a national

charitable organization solely dedicated to meeting the needs of citizens with

physical, medical, and mental disabilities by providing dental care to disabled and

aged people who cannot afford treatment and are not eligible for public aid. Our

country's standard of dental care is one of the highest in the world, yet those

Americans most desperately in need often go untreated. They may be children or

adults who are mentally or physically disabled. They suffer from cerebral palsy,

multiple sclerosis, mental illness, and many other disabilities. The foundation was

established in 1974 and is an affiliate of the American Dental Association and state

and local dental associations. Disabled, elderly, and mentally compromised

patients are linked with dentists in their communities to receive free comprehensive

dental treatment, including prosthetics. There is also a program to provide

training to help parents and professionals caring for developmentally disable

persons to provide appropriate oral hygiene.

Patient Advocate Foundation

700 Thimble Shoals Boulevard, Suite 200, Newport News, VA 23606, Fax: (757)

873-8999, Toll-free: (800) 532-5274, E-mail: [email protected], Website:

http://www.patientadvocate.org

Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit

organization which provides professional case management services to Americans

with chronic, life threatening and debilitating illnesses. PAF case managers serve

as active liaisons between the patient and their insurer, employer and/or creditors

to resolve insurance, job retention and/or debt crisis matters as they relate to their

diagnosis also assisted by doctors and healthcare attorneys. Patient Advocate

Foundation seeks to safeguard patients through effective mediation assuring access

to care, maintenance of employment and preservation of their financial stability. Patient Advocate Foundation (PAF) Co-Pay Relief Program

http://www.copays.org/

866-512-3861

The PAF Co-Pay Relief Program provides financial assistance to patients who

meet certain qualifications to help them pay for the prescriptions and/or treatments

they need. This assistance lets patients who have chronic, life threatening and/or

debilitating illnesses afford the out-of-pocket costs for these items that their

insurance companies require.

Advocacy for Patients with Chronic Illness, Inc.

18 Timberline Drive, Farmington, CT 06032, Telephone: (860) 674-1370, Fax:

(860) 674-1378, E-mail: [email protected], Website:

http://www.advocacyforpatients.org

Advocacy for Patients with Chronic Illness, Inc. is a voluntary organization that

provides free information, advice and advocacy services to patients with chronic

illnesses in areas including health and disability insurance, Social Security

disability, employment discrimination, educational equity, and resource location.

Hill-Burton Free and Reduced Cost Health Care

Health Resources and Services Administration

1-800-638-0742 or 1-800-492-0359 in Maryland

http://www.hrsa.gov/hillburton/

In 1946, Congress passed a law that gave hospitals, nursing homes and other

health facilities grants and loans for construction and modernization. In return,

they agreed to provide a reasonable volume of services to persons unable to pay

and to make their services available to all persons residing in the facility’s area.

The program stopped providing funds in 1997, but about 200 health care facilities

nationwide are still obligated to provide free or reduced-cost care.

1. Find the Hill-Burton obligated facility nearest you from the list of Hill-

Burton obligated facilities.

2. Go to the facility's admissions or business office and ask for a copy of the

Hill-Burton Individual Notice. The Individual Notice will tell you what

income level makes you eligible for free or reduced-cost care, what services

might be covered, and exactly where in the facility to apply.

3. Go to the office listed in the Individual Notice and say you want to apply for

Hill-Burton free or reduced-cost care. You may need to fill out a form.

4. Gather any other required documents (such as a pay stub to prove income

eligibility) and take or send them to the obligated facility.

5. If you are asked to apply for Medicaid, Medicare, or some other financial

assistance program, you must do so.

6. When you return the completed application, ask for a Determination of

Eligibility. Check the Individual Notice to see how much time the facility

has before it must tell you whether or not you will receive free or reduced-

cost care.

RSDSA (Reflex Sympathetic Dystrophy Syndrome Association):

"Finding a Free Clinic”

http://www.rsds.org/4/resources/out_work/free_clinics.html

RSDSA P.O. Box 502, Milford, CT 06460, Tel: 203.877.3790, Toll Free: 877.662.7737,

Fax: 203.882.8362

E-mail: [email protected]

If you need to see a doctor but cannot afford one, a free or low-cost clinic may be

able to help you. Keep in mind that all free clinics have eligibility rules for patients:

typically free clinics see only patients who have low income and who do not have

insurance for the treatment needed. Depending upon their eligibility rules, not all

clinics will be able to treat you. However, there may be some flexibility with the

eligibility rules, so even if you think you do not qualify it may still be worth calling

the clinic to ask about your situation. Sometimes the care at a free clinic is not

completely free; there may be a small charge, depending upon any income you

have. In addition, free clinics are not always able to provide care for complicated

conditions like CRPS, but they still may be of at least some assistance.

Oley Foundation

214 Hun Memorial MC-28, Albany Medical Center, Albany, NY 12208-3478

Telephone: (518) 262-5079, Fax: (518) 262-5528, Toll-free: (800) 776-6539, E-

mail: [email protected], Website: http://www.oley.org

The Oley Foundation is a national, non-profit organization dedicated to donating

tube-feeding supplies, providing educational and emotional support, outreach

activities, and clinical outcome information for individuals who depend on home

intravenous (parenteral) and tube (enteral) nutrition, their families, professionals,

and others. Individuals who depend on such nutrition include those who cannot

receive enough nutrients from the food they eat because of severe gastrointestinal

disorders that may impair their swallowing or intestinal absorption. The

foundation facilitates a national network of regional volunteers who provide

emotional support and outreach at the local level. Comprised of individuals who

are themselves users of home nutrition and their family members, the network

offers services ranging from telephone support and hospital visitation to lectures

and self-help get-togethers. The Oley Foundation also sponsors yearly conferences

that bring together home nutrition users with experts in the field. Educational

materials produced by the Oley Foundation include brochures, audio-visual aids,

and information about travel, swimming, and other topics.

UnitedHealthcare Children's Foundation

MN012-S286, PO BOX 41, Minneapolis, MN 55440-0041, (952) 992-4459

http://www.uhccf.org/

The UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity

dedicated to facilitating access to medical-related services that have the potential

to significantly enhance either the clinical condition or the quality of life of the

child and that are not fully covered by the available commercial health benefit

plan. This “support” is in the form of a medical grant to be used for medical

services not covered or not completely covered by commercial health benefit plans.

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Healing The Children Northeast, Inc.:

PO Box 129, 219 Kent Road, New Milford, CT 06776 Telephone: (860) 355-1828

Fax: (860) 350-6634 E-mail: [email protected], Website: http://www.htcne.org

Healing The Children Northeast, Inc., (HTCNE) is an international, voluntary

organization dedicated to providing medical and surgical treatment to children

from impoverished backgrounds. Established in 1985 and currently consisting of

approximately 2,000 members and 14 chapters, HTCNE assembles volunteer teams

of medical and surgical health professionals to travel to host countries where

children and young adults are treated free of charge. HTCNE's "Medical Missions

Abroad" program serves over 3,000 children annually and provides over three

million dollars in donated services. Healing The Children Northeast is committed

to expanding the Medical Missions Abroad program to meet the increasing needs of

children worldwide. HTCNE provides referrals to appropriate healthcare

agencies, maintains a database, and offers a variety of materials including

brochures, pamphlets, booklets, reports, Spanish language materials, videos, and a

quarterly newsletter entitled "Healing."

Freeclinics.us

1800 Diagonal Road, Suite 600, Alexandria, VA 22314, Phone 703-647-7427, Fax 866-

875-3827, Email [email protected], http://www.freeclinics.us/

The National Association of Free Clinics (NAFC) is the only nonprofit 501c(3)

organization whose mission is solely focused on the issues and needs of the more

than 1,200 free clinics and the people they serve in the United States.

National Association of Hospital Hospitality Houses, Inc.

44 Merrimon Avenue, Ashville, NC 28801, Telephone: (828) 253-1188, Fax: (828)

253-8082

Toll-free: (800) 542-9730, E-mail: [email protected], Website:

http://www.nahhh.org

The National Association of Hospital Hospitality Houses (HHH), Inc., is a not-for-

profit organization that promotes and assists other not-for-profit programs

providing lodging and supportive services in a caring environment for families

receiving medical care away from home. The association provides services and

technical assistance to establishing and developing Hospital Hospitality Houses.

Membership is available to hospitals, groups, and individuals interested in

developing a program in their area, as well as to organizations supporting the

goals of the association. Membership offers participation in an annual national

conference designed for networking and education; a national referral directory

listing Hospital Hospitality Houses and services; consultation services to newly

developing programs; a resource center and clearinghouse to aid HHH programs,

staff, and boards; and a newsletter and other publications.

Hospitality Homes

20 Overland St., Suite 204, Boston, MA 02215 Telephone: (617) 482-4338, Fax:

(617) 582-7980, Toll-free: (888) 595-4678 E-mail: [email protected], Website:

http://www.hosp.org

Hospitality Homes is a voluntary, not-for-profit organization that provides cost-

free temporary housing in volunteer host homes for the families and friends of

patients – as well as, when needed, the patients themselves – traveling to Boston for

medical care. Hospitality Homes serves all families, regardless of income,

nationality, or the patient’s age, diagnosis, or treatment facility.

Travelers Aid International

1612 K St., NW, Suite 206, Washington, DC 20006, 202-546-1127,

http://www.travelersaid.org/

Travelers Aid International is the association for Travelers Aid agencies and

programs in the United States (including Puerto Rico), Canada, and Australia.

Travelers Aid served more than 6.5 million people last year in forty-eight

communities, and at thirty-six transportation centers (airports, bus and train

stations). Travelers Aid also provided casework services to 200,000 (including

homeless persons, and individuals and families in crisis). Each member of the

Network is independently managed and provides programs and services that meet

the needs of its community.

Mercy Medical Airlift (MMA) For more information, contact the National Patient Travel Helpline (Mercy Medical Airlift) 4620 Haygood Road, Suite 1, Virginia Beach, VA 23455 Telephone: (757) 318-9174, Fax: (757) 318-9107, Toll-free: (800) 296-1217, E-mail: [email protected], Website: http://www.PatientTravel.org

The charity that operates the National Patient Travel Center, operates the National

Patient Travel Helpline. The Helpline is funded by many organizations dedicated

to facilitating charitable medical transportation on a national level. Founded in

1992, it now serves more than 35,000 patients a year. The mission and purpose of

the Helpline and the National Patient Travel Center are to ensure that no

financially needy patient is denied access to distant specialized medical evaluation,

diagnosis or treatment for lack of a means of air travel. Twenty-four hour service

is available. Referrals are based on an evaluation of the patient's medical

condition, type of transport required, and departure/destination locations. This

service is staffed by people who take the time to explain all known appropriate

options.

Cancer Financial Support

Cancer Care

800-813-4673

“Cancer Care Assist”

http://www.cancercare.org

CancerCare offers a free guide on financial assistance resources for people with

cancer. A Helping Hand: The Resource Guide for People with Cancer –

Financial Edition includes detailed listings of more than 400 national and regional

financial assistance organizations, and helpful tips for patients on taking control of

their finances.

Lance Armstrong Foundation

http://www.livestrong.org

512-236-8820

The National Cancer Institute

800-422-6237

http://www.cancer.gov

Financial Assistance and Other Resources for People With Cancer

The American Cancer Society’s Road to Recovery Program

http://www.cancer.org/docroot/COM/content/div_OH/COM_1_1x_2007_Road_to_

Recovery_Provides_Free_Transportation_for_Cancer_Patients.asp

1-800-227-2345, option # 1

Road to Recovery Provides Free Transportation for Cancer Patients. Cancer

patients receiving treatment at a nearby hospital or medical facility can get free

transportation to and from their treatment site. The American Cancer Society’s

Road to Recovery program is a free service for cancer patients who lack

transportation.

Cancer Financial Assistance Coalition (CFAC) http://www.cancerfac.org/

[email protected]

The Cancer Financial Assistance Coalition (CFAC) is a coalition of organizations

that help cancer patients manage their financial challenges by educating them

about existing resources. Patients or health care providers can search the CFAC

database for organizations that help with specific cancer diagnoses or that provide

a specific type of assistance or need. CFAC is a coalition of organizations and

cannot respond to individual requests for financial assistance via e-mail or

telephone.

Additional Resources:

Member Organizations

http://www.cancerfac.org/members.php

Cancer Legal Resource Center Address: 919 Albany Street, Los Angeles, CA 90015, Phone: 213-736-1455, Toll

Free: 1-866-843-2572, http://www.CancerLegalResourceCenter.org, E-mail:

[email protected]

The Cancer Legal Resource Center (CLRC) is a joint program of the Disability

Rights Legal Center, a 501(c)(3) nonprofit organization, and Loyola Law School,

Los Angeles. The CLRC provides free and confidential information and resources

on cancer-related legal issues to people with cancer, their families, friends,

employers, health care professionals, and others coping with cancer. The CLRC

has a national toll-free line where callers can receive information about relevant

laws and resources for their particular situation. The CLRC volunteer panel of

attorneys and other professionals provides more in-depth information and counsel

to CLRC callers. Extensive resources are available on a broad range of cancer-

related legal issues, including health insurance, employment,government benefits,

estate planning, advance health care directives, family law, and consumer

assistance. CLRC provides services in Spanish and has a bilingual staff who are

able to assist people on the toll-free line. Some publications are also available in

Spanish.

National Association of Attorneys General 8th Floor 2030 M Street, NW. Washington, DC 20036 Phone: 202-326-6000

http://www.naag.org, http://www.naag.org/attorneys_general.php

The National Association of Attorneys General (NAAG) assists Attorneys General

in the delivery of high quality legal services to the states and territorial

jurisdictions. NAAG’s members are the Attorneys General of the 50 states and the

District of Columbia and the chief legal officers of the

Commonwealths of Puerto Rico (Secretary of Justice) and the Northern Mariana

Islands, and the territories of American Samoa, Guam, and the Virgin Islands. The

Attorneys General provide consumer protection information and advice and track

complaints filed against charitable organizations or other businesses. A consumer

complaint may not be filed with NAAG but should be filed with the Attorney

General's office in which the problem has occurred. Additional Resources:

Contact Information for State Attorneys General

FINANCIAL ASSISTANCE FOR DENTAL CARE:

National Foundation of Dentistry For the Handicapped

1800 15th Street, Suite 100, Denver, CO 80202, Telephone: (303) 534-5360, Fax: (303)

534-5290, E-mail: [email protected], Website: http://www.nfdh.org

National Foundation of Dentistry for the Handicapped (NFDH) is a national charitable

organization solely dedicated to meeting the needs of citizens with physical, medical, and

mental disabilities by providing dental care to disabled and aged people who cannot

afford treatment and are not eligible for public aid. Our country's standard of dental

care is one of the highest in the world, yet those Americans most desperately in need

often go untreated. They may be children or adults who are mentally or physically

disabled. They suffer from cerebral palsy, multiple sclerosis, mental illness, and many

other disabilities. The foundation was established in 1974 and is an affiliate of the

American Dental Association and state and local dental associations. Disabled, elderly,

and mentally compromised patients are linked with dentists in their communities to

receive free comprehensive dental treatment, including prosthetics. There is also a

program to provide training to help parents and professionals caring for developmentally

disable persons to provide appropriate oral hygiene.

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